Girls in year 8 in the UK (aged 12 and 13) are offered a vaccine that protects against human papillomavirus or HPV. While HPV is very common, in some people it can cause cancers of the cervix, mouth and throat, vulva, vagina, penis and anus. The vaccine protecting against HPV was originally given in three doses when the immunisation programme first started, however it is now given in two doses over at least six months. Most girls in England get the HPV vaccine (around 87% of them), but as we’ve written before, uptake of the vaccine is lower among girls from Black and Asian Minority Ethnic backgrounds. We also know that more girls get the first dose of the vaccine than complete the series. This is concerning as the vaccine works best if girls get all doses. However, we do not yet properly understand why some girls are not getting the vaccine and why some girls do not complete the series. With this information we can identify targets for information campaigns or wider policy changes that can help establish and maintain high coverage.

In a study that was published at the end of last year, funded by Cancer Research UK, we spoke to girls who had been offered the HPV vaccine as part of the routine immunisation programme to find out why some girls had not got any doses of the HPV vaccine and why some had started, but not completed the series. The girls were recruited from 13 schools in London as part of a larger questionnaire study (some of the findings have been reported already here and here). Girls were asked if they had received the HPV vaccine and if they had, they were also asked how many doses they had received. We grouped girls as being unvaccinated (they had received no doses) or under-vaccinated (they had started the series, but had not finished it). They were then asked to explain why they were unvaccinated or under-vaccinated, and we categorised their responses using content analysis.

There were 259 girls who were either unvaccinated (202 girls) or under-vaccinated (57 girls) who also gave us a reason to explain why this was the case. These girls came from a diverse range of ethnic backgrounds; around 31% were from White backgrounds, 29% from Black backgrounds and 20% from Asian backgrounds (around 20% were from an ethnic background other than White, Black or Asian, which were mainly mixed backgrounds, and 2% did not tell us their ethnicity).

Reasons for being unvaccinated

The most common reason that girls gave to explain why they had not had the HPV vaccine was that they did not have consent from their parents (41% of girls said this).

“My mother didn’t want me to have it, even though I did” (Black Caribbean; self-reported ethnicity)

Other common reasons included concerns about safety (reported by 25% of girls) and believing that they did not need the vaccine (19% said this).

“My mum didn’t trust the vaccine because it was new” (Turkish).

“Because I’m not going to have sex before marriage” (Pakistani)

Reasons for being under-vaccinated

Administrative problems were the most common reason that girls gave to explain why they had not finished the vaccine series (51% gave this as a reason), including being absent from school on the day of vaccination and some did not know that multiple doses were needed.

“I never got round to having the 3rd one [dose] because I switched schools” (Indian).

Health reasons, including girls believing that they had conditions which meant they should not complete the series (9%) and procedural issues, including fear of needles (5%), were also reported.

“I hate needles” (Mixed White / Black Caribbean)

“After the first vaccine I started to feel lighted headed” (Mixed White / Black Caribbean)

Reasons given by girls from different ethnic backgrounds

Compared to girls from other ethnic backgrounds, girls from White backgrounds were most likely to say that they were concerned about safety. Girls from Black and Asian backgrounds were most likely to say that they did not think that they needed the vaccine.

Summary

In this study we tried to find out the reasons why girls from a diverse range of ethnic backgrounds have not had the HPV vaccine or have not completed the series. Among girls who had not had the vaccine at all, concerns about the safety of the vaccine and believing that they did not need the vaccine were commonly reported. Girls who had not finished series said that they were absent from school when the vaccine was offered, did not know that multiple doses were needed and felt they had health issues that meant they should not have all doses. There was some suggestion that girls from White backgrounds were most commonly concerned about vaccine safety and that girls from Asian and Black backgrounds were most likely to believe that they did not need the vaccine. These findings can be used to tailor interventions to increase informed participation in the HPV vaccination programme among girls who are currently unvaccinated or do not complete the series. This will be the next step in one of our current programmes of work funded by Cancer Research UK.

Over the last 10 years several studies in the UK have suggested that women from ethnic minority backgrounds are less likely to attend for cervical screening, the question of why this might be remains. Our recent work published last week in the British Journal of Cancer attempts to shed some light on this. We surveyed 720 women aged 30-60 years old from Indian, Pakistani, Bangladeshi, African, Caribbean and white British backgrounds, using quota sampling to ensure a large enough sample of women from each ethnic group were included. Compared to the white British women, women in each of the ethnic minority groups were between 5 and 13 times more likely to be a non-attender at screening, i.e. they had not been screened in the last 5 years. This is after adjusting for age, marital status and education level.

Never heard of screening:
Among the ethnic minority women 24% said they had never heard of cervical screening or they had never received an invitation. These women were more likely to have migrated to the UK as adults, not speak English well and have no formal qualifications. This finding is in line with our previous qualitative work which suggests a general lack of awareness about the cervical screening programme. It therefore seems important that we find ways to engage these women with the issue of cancer screening, and raise their awareness of the programme and their eligibility to take part. In England, all women aged 25-64 who are registered with a GP receive regular screening invitations, but our findings suggest that this information isn’t getting through to some groups.

Been screened before, but not recently:
We also identified a different group of non-attenders who had been screened in the past (more than 5 years ago), but had not been screened as recommended, despite receiving a letter reminding them to go. Overall 37% of ethnic minority women fell into this group. These women were more likely to be in the older age group (50-60 years) but other socio-economic factors (such as education level, migration status and language) didn’t predict who fell into this group. Exploring the reasons for being overdue cervical screening in older women is important as recent work suggests that not being screened between the ages of 50 and 64 years is associated with a greater risk of cervical cancer when women are over 65 years. There is also evidence that women over 65 years from both Asian and Black backgrounds have higher rates of cervical cancer. We looked at a range of attitudes to screening and found that women who had not attended as recommended were more likely to think that screening didn’t apply to them, either because they did not have any symptoms or because they were not sexually active. Some considered screening to be important, but had difficulty fitting it in around other commitments. This finding is consistent with our qualitative work where one Bangladeshi woman said; “It wasn’t that I didn’t want to do it, I felt that it wasn’t a great priority for me at that time, everything else was more important”. For these women interventions should be designed to ensure an understanding of the purpose of screening and the potential benefits for asymptomatic women and those who are not currently sexual activity.

In this study and others, we are trying to gain a better understanding of why some people don’t take part in cancer screening. As this paper shows, people’s reasons can be very different, from not knowing anything about screening, to thinking it’s important but being too busy to go. By understanding more about these different reasons, we can help to ensure that everyone makes an informed choice about screening, and is able to take part if they want to. We hope this work will help to reduce inequalities in screening participation and make sure that everyone is properly informed about the purpose of screening.